What's new?

How you might feel

Overwhelmed

It may seem as though everything is happening at once and you don’t have any control. You may feel you will never cope and are struggling.

There is no right way to react to being told your child has a chronic illness and everyone will react differently. How you react is unique to you – becoming distressed or feeling scared doesn’t mean you are a not coping or a failure. It is natural for you to be ‘ all over the place’ in these early days.

Angry

You may feel angry knowing that your child has CKD and that your life and the life of your family has changed, or may change, and not in a way that you would have wanted.

Although it is important to allow yourself to feel your emotions, managing them is also important. Most people are able to do this but sometimes it is difficult. If you do feel yourself getting angry, especially with other people, it is often better to walk away and take some time out. There is a parent room on the ward as well as a large restaurant and two cafes in the hospital and there are staff you can talk with to try to work through with you how to deal with any issues that are causing problems.

There is a zero tolerance policy in all our hospital departments towards aggressive behaviour.

Frightened

You may be fearful of the now and of the future, of your child’s condition, of how they will cope with schooling, careers, life prospects, your own health needs, operations, procedures.... the list is endless.

If you are frightened or worried about anything just tell someone. No matter how silly you think that fear is or that question is, it is likely someone else will at some time have said or asked something very similar. If the person you ask doesn’t know the answer they will find someone who does for you. Better to talk about it than to sit worrying!

Resentful

You may feel resentful about having all this in your life, about having to split your time between other children and your child who needs more attention. You may resent having time off work as this may hamper your career or affect your finances.

Feeling you have lost control and are unable to help your child

The majority of parents want the best for their children and naturally want to make things better for them when they go wrong . From an early age children look to parents for then to ‘make it better’ but when your child is faced with long term illness you can’t make them better and this can be very distressing.

I'm used to making it better for him and I can’t and it’s rubbish.

You want to pretend this isn’t happening

You can’t believe this has happened to your child and your family. You don’t want to believe it and want it all to go away – but at the same time you have to deal with treatment plans, medication and procedures

I was ok for a while then I just withdrew and thought maybe they’ve got it all wrong and she’s not ill.

Loss and Change

When we lose something or someone, we usually go through a period of grieving. Receiving a diagnosis of long term illness can leave family members having similar feelings because they can feel they have lost their ‘well child’ and their existing life and have to adjust to something different.

I had a plan of things she would do and now I don’t know if he will be able to do any of those things.

Having CKD doesn’t mean your child won’t be able to do all the things you thought they would. Although some things may be more difficult, many children grow up to lead successful, fulfilled lives.

The team are here to support your child to be the very best they can be and to achieve everything that is possible for them in their future life

Your child’s illness will affect the whole family and getting through is about all family members learning and finding new ways to live with a new sort of life

Coming soon: Parents/carers/friends have told us about the way they felt in those early days and beyond

Coming soon: Parents/Carers/friends have also told us of some of the things that helped them and tips they would like to pass on to others

EMEESY is the Children's Renal and Urology Network for South Yorkshire, The East Midlands and the East of England.